Tuesday, April 27, 2010

This past winter has been a challenging one in many ways. As you all know, we have been living as shut-ins since September. We have chosen to do this to keep Eli healthy. I’m so proud to say that since then, Eli has NOT been sick once! When you stop to think about it, it really is a miracle. Most pediatricians will tell you that kids will get an average of 10-12 colds a year. Eli had one in August, and none since! WOW!! We receive some relief in knowing that our hard work is really paying off.

While living as shut-ins, I know that we have offended many, hurt others, and broken some hearts. We have said "No" to visitors more than we could have ever wanted. We've even suffered permanently broken relationships because of family who do not understand our measures. Trust me, there is nothing worse than telling the kids’ grandparents they can’t come see their critically ill grandson. Jason and I haven’t been to a social function since September. No birthday parties, no Christmas parties, no church, no family gatherings….nothing! It has been so incredibly difficult not to be a part of the social world. I have learned to do most of my shopping online. Grocery shopping, Costco runs, and picking up prescriptions have all been added to Jason’s list. The only places the kids and I go are to doctor appointments.

The hardest part of all of this is seeing Paige miss out on so much in her developmental years. She hasn’t seen many of her friends in months... so long, many are forgotten. She's can't even tell us what color hair they have, any more. She doesn’t get to go to the park, the zoo, or AWANA. She doesn’t go to the grocery store. A fun outing for her is CHCC for one of Eli’s doctor appointments. How fun can that possibly be for a 3 year old? We so badly want to enroll her into gymnastics, but can’t. She should be in pre-school, but can't. She should be freely playing with her friends. Instead she can’t, “in case they have germs.” And she knows it. Paige has a great imagination and loves to play with her brother. She watches over him like the wonderful big sister that she is. She is an amazing kid, and we are so very thankful that she has an easy going, curious, fun, loving character. It certainly makes dealing with our situation so much easier.

I know many have wondered why we've taken such extreme measures. "Why can’t you come to church?" "Why can’t Paige play with her friends if they have been healthy?" "Why can’t the grandparents come see their grandkids? It’s only a short while." Trust me, we’ve heard them all. We’ve often asked ourselves the same question. But we always come back to the same realization. What if? What if a visitor has a cold or flu virus that isn’t infecting him/her, but infects Eli? Just because you're not sick, doesn't mean you're not a carrier.What if Tanya gets sick with a simple cold? Who will care for the kids? Jason has to work. Due to babysitting limitations, Paige actually had to stay with a friend once, and only once. She got sick, and was quarantined with grandparents and friends without kids for two weeks! What if Eli were to get sick a few weeks before his next cath lab? Will that make him fail yet again, meaning there is NO chance at surgery? As parents we have to weigh all of these options. Every single time we're asked if someone can come visit, or if Paige can go to a party, or we are offered dinner, we consider all our options. The only answer has always been the same answer. We cannot compromise. We have to live our lives with no regrets for Eli’s care. I don’t want to fail the next cath lab having a “what if” in the back of my mind. I have to give Eli the BEST CHANCE POSSIBLE to be a candidate for his next surgery.

If you are one of those people who may have been offended in the process of us living with no regrets, please look at our situation from our point of view. If you think you understand, multiply that burden by 100. It has not been easy for us. But so far, we have no regrets for what we have done. And we will continue to live this way, until we feel it’s no longer necessary.

Monday, April 19, 2010

A few weeks ago I (Tanya) was listening to Blue Man Group while tidying up the house. Last week after dinner, Paige asked to dance to the "boom boom" music. I had to think what she might be talking about, and figured she must be referring to Blue Man. I found our DVD of their concert and played it so she could see the characters, but also the fun instruments they play. All four of us were rocking out to a very loud in-home concert of Blue Man Group. Paige started dancing around, eventually leading to head banging. Eli laid on the floor watching intently, and often laughing at his silly sister. Both of the kids enjoy listening and moving to rhythmic music, following Daddy's drumming and rocker footsteps.